Hey Everyone!
Over the last couple of months, I have been having a multitude of strange symptoms. I have gone through an immense amount of testing with very little answers. I've also done multiple and thorough neuro exams and have no weakness or atrophy. I do not have lyme disease and have tested extensively for it. I also do not have a vitamin deficiency. I have had a brain and full spine scan which were both negative. I have done vast other testing and have been cleared by infectious diseases, cardiology, endocrinology, auto-immune (numerous exams), gastro (endoscopy to check for celiac), etc... The only blood work that came back really abnormal is my EBV. Here are the values of the test:
EBV VIRAL CAPSID AG (VCA) AB (IGM) 81.00 H U/mL NL2
EBV VIRAL CAPSID AG (VCA) AB (IGG) 316.00 H U/mL NL2
EBV NUCLEAR AG (EBNA) AB (IGG) 322.00 H U/mL NL2
EBV EARLY ANTIGEN D AB (IGG) <9.00 N U/mL NL2
Quickly going over it, my symptoms are as follows: unprovoked muscle soreness, muscle twitching, feelings of off-balance/coordination (hands and legs), random sores in my mouth, heavy anxiety, joint/body stiffness, brain fog, vision floaters, occasional pins/needles, and heartburn. This all seemed to start one day with a one-off instance of blurry eyesight that cleared up quickly. I was sick with a mild cold at the time then the rest of the above symptoms started to appear and have been going on for 8 months.
I'm just so curious as to whether or not this could be the cause and if so, does anyone know of an effective treatment?
Any insight on this would be really helpful.
Thanks!
These are the symptoms of EBV, which you should be diagnosed as having glandular fever/mono? It's a illness that takes a very long time to recover, so don't think of it as a chronic disease....you will get better over time. The best medicine is to rest and take it easy when you can. Try to keep a positive mind that you will get better soon. Eat healthily and try and look after yourself as much as possible. Some will recommend supplements, but they haven't done much for me, but I guess vitamin c cannot hurt. I'm also around 8 months and I'm feeling a whole lot better than I did say 3 months ago, but I do have little set backs, mainly when I'm more active or get stressed about things...when I don't need to. I've settled for in my mind that it just needs to runs it's course and your body will deal with it best, when it can.
I’m taking about 30 supplements and although I’ve had a few good days here and there ( having very bad day today ) not sure they’re helping me either .
I have just started the Monolaurin which is supposed to be anti viral and very good for EBV . Just the whole process of THIS IS STRESSFUL.... not knowing from one day to the next how you are going to feel .
Hello Lori!
Thanks for letting me know. I have started to take greens, vitamin D, vitamin C, and B12. The greens seem to have helped with my energy a bit and skin issues but not much else. I actually also bought a bottle of Monolaurin and was planning on giving it a shot soon. Can you let me know how it works out for you?
Hey Dodge,
I'm not really sure if I ever had mono, I remember getting sick was a horrible stomach bug a few weeks before all of this happened. Otherwise, I don't recall anything that was all that severe. I agree that some days, I feel much better than others, I'm just waiting for the day that I get up and everything is gone. One of my biggest issues is that I always fear that a HORRIBLE new symptom will appear one day (thinking not being able to pick-up a frying pan or something). Weakness scares me the most but I have not had any and still exercise extensively. Further, fatigue has never been a symptom throughout all of this or at least I have not let it prevent me from doing anything. I've gotten so used to these symptoms over the last 8 months that I feel I may not ever notice them being gone as it will always be an expectation to have them. Thanks!
Rest , rest and rest some more , yes I have all the same symptoms and a few more. I have tried it all. I believe time is the best cure. Although eating right and supplements can’t hurt and I ate good and exercised before this horrible virus. I have 9 months down and what I have noticed is all these horrible symptoms are more mild than they used to be and my energy is way better. For me after 8 months I’m finals seeing some good improvements. Hang in their as time passes you will return to not at some point.
Thanks David, I'll just hang in there for now and try to just accept it for what it and and continue living my life. Does anyone else have any other input? Thanks!
It’s just a waiting game I’m 6 months in and had one of the lowest days yesterday . In bed by 5.30pm with fatigue that I could never explain to anybody .
It’s the mental stuff that gets you too the depression is unbelievable and boy I can’t wait for this to be over . Losing it !
Well be careful with the workouts ... I kept working out like a maniac for 5 months as had no clue I had mono . I would go so tired which was the wrong thing to do . Now I’m just doing the minimum I have to .... you would know if you had ‘the fatigue’ it’s so overwhelming .
Have you had positive blood tests ?
Lori I’m so so sorry your having a ruff time right now. What I can say for me anyhow is that those bad times get shorter and shorter and lessen as time goes on. Hang in their good times are coming , this is not forever. I know it may seem that way now but it’s not.
Thank you David just a bery bad couple of days ... boy this must only attack very strong people .. definitely not for the weak .
Hi Shelin, i'm sorry to hear you are also experiencing this.
We have the same problem and symptoms except i am dealing with swollen lymph nodes too, do you have it also? I hope we get better ASAP..
Yeah, this whole thing is just horrible. The symptoms seem to just stay the same and never really get better or worse... 
Hang in there everyone!
How is everyone doing today ?It seems like most people only post when they are really sick. For me I slowly get better and return to as normal of a life as I can right now , then I get ill again. But the bad times are not as bad as they used to be and the good times seem like they last a little longer. Man o man this Epstein Barr virus is horrible. What a life changing event. From what I have read most people are sick with this crap for 10 to 18 months. Does anyone have a positive story ?????
Hello David,
Some days are better than other days! If I sleep really badly, the symptoms are far more present. Ignoring them in general is the best possible solution though. I have been dealing with this for almost 8 months and I DO feel that I am getting better but I also feel that I still have some time before it goes away completely. My PCP is now thinking that it may have derived from a coxsicle infection (who knows!).
I'm glad that you're feeling better overall!
Thanks!
As we know this is a slooowwww recovery . Ok so good times are coming ‘more often’ that sounds like you’re on the road to recovery . I’ve had a few good days in July and an ok week in August then bam ! Right back at ya! All symptoms return and worse.
Nobody deserves this torture and it is torture ! I’m not discounting any other Illness and I know a lot of people are suffering out there but boy this one can literally brake you .
Yes if I sleep badly I can just forget the next day .... I literally sit all day watching the clock waiting for bedtime .
Hi Shelin,
So sorry to hear you've been going through such a tough time this last couple of months, I do really hope and pray that things can settle down as it definitely sounds like you have been through the mill with awful symptoms and tests and things.
It definitely sounds like it could be from mono caused by the EBV virus. I went through a terrible time for a number of months with mono and want to reassure you that many of the symptoms you describe were similar to mine, my main ones were the low grade fever constantly, pain around the glandular areas in my neck, armpits, chest and groin, fatigue and feeling drained, joint and muscle aches and pains, and just generally feeling unwell.
It is reassuring that the other tests you have had have been all good, although I do understand the frustration when you just want an explanation for what's been going on. Mono is so individual and I've come to learn can cause so many different symptoms in different people, but broadly speaking I do see the things you describe as something that definitely sounds like it could be mono or a mono type illness. And I want to reassure you that this is classic mono that other tests show up as normal even though still feeling so unwell - I absolutely want to reassure you that if mono is the cause, which sounds likely, you absolutely will get better and just hang in there it's so frustrating, it can take a little time is the hard thing but even if it full recovery isn't immediate, please do know what this thing does go away and you do get better from it! Take it from me as someone who went through it and thought they never would, thanks only to God's healing hand got through it!
Taking vitamins and herbs helped me a lot during recovery, a good strong multi-vitamin per day, higher doses of Vitamin C (1000mg-3000mg per day), a B complex vitamin per day (great for nervous system and energy levels) and immune boosting herbs like siberian ginseng and echinacea.
Hoping things can be more settled soon and remember get plenty of rest and be kind to yourself at this time, just getting through each day with this virus is an achievement I know that for sure you and remember you will get better.
Craig
P.S. Meant to say Shelin it took me 10 months to see a major breakthrough and real turning point, and at about 9 months I had a period like you describe with awful joint and muscle pain but it actually proved I think to be my body finally starting to kick this thing out for good - so remember there is hope and it can be very normal for this to go on as long as this and then go on to make a full recovery - in no way will it be chronic or anything it's just your body takes a good whack from this and it takes such a while to recover but you will definitely fully recover!!
Craig
yes ive been praying that my last 5 weeks of hell is the virus dying off . im at month 6 and its been the worse so far .